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The Largest Gathering of Positive Women Ever

Winter 2000

In October of 1999, over 1200 women living with HIV disease gathered in one place, the Los Angeles Convention Center for the National Women and HIV Conference. This was the largest gathering of positive women in the history of the AIDS epidemic, which has been nineteen long years. The organizers of the conference spent eighteen months planning the event.

Over the years (throughout the history of the AIDS epidemic) there have been a total of four National Conferences for Women with HIV/AIDS. The first Conference was held in Washington DC after activists had pressured the government entities into providing a national forum for and about women with HIV. (In this case "activist pressure" included people chaining themselves to the desks of government officials and getting arrested for civil disobedience.) Some may consider such acts of civil disobedience as rather drastic, however, the reality is that there would have never been a women's conference about HIV/AIDS if the activists had not taken such desperate and heroic measures.

The 2nd conference was also held in Washington DC in 1995. The 3rd was held in Pasadena, Ca. '97 and the 4th was held at the Los Angeles Convention Center, '99. (This is contrasted with so many other conferences. For example: I just got a notice for the 12th National HIV/AIDS Update Conference, the 12th.)

One of the main goals of this last conference was to set a Women's National Agenda for AIDS Policy, Treatment and Research. To date it is still unclear what this agenda will look like. When setting such an agenda, it is crucial to ensure inclusion of all issues and areas that need to be addressed. In the past there was -- and there still is -- tension around who should produce this national event and whether or not it is necessary at all to have such a conference. In fact, it is relatively apparent that the federal government, in particular DHHS (the Department of Health and Human Services), would like the women's National Conference to just go away and never happen again.


Stop the National Conference for Women

In the past, due to community activist pressure, the feds have felt slightly obligated to support a national forum for HIV positive women. However, this year was different! DHHS did absolutely NOTHING to financially support this conference. They did absolutely NOTHING to assist with the planning or implementation. In fact, the DHHS spent quite a bit of time and resources making an attempt to stop the National Conference on Women and HIV from ever occurring. (There were somewhat founded rumors of various institutions funding agencies to come and "protest" the conference.)

Pure Embarrassment

Perhaps the feds have several reasons as to why they do not want to see HIV positive women across the country gather in one place. There are those of us in the community who feel that one of the main reasons the feds don't want our conference to happen is pure embarrassment. When 1,200 positive women come together in one place, our health status is obvious. "The women are visibly 'sicker' than the men", I overheard a local government official say. More than twelve women had to go to the hospital over the three day Conference.

In addition to our health concerns, are social implications as well as empowerment issues. When we all gather in one location it is also very apparent that the NIH (National Institutes of Health), the CDC and HHS have collectively done NOTHING to stop the spread of AIDS among women in the United States. At this point, we can only hope that they are embarrassed and humiliated. (If you want to do more than "hope," you can publicly embarrass and humiliate them yourself.)

Divide & Conquer

There have been many attempts by the 'feds' to divide & conquer women with HIV. Trying to keep us fighting amongst each other is the oldest tactic there is. The main action taken against this conference was the withholding of financial support. A memo was distributed to all departments of DHHS with a directive to all the Heads of Departments instructing them NOT to provide any funding for the National Women's Conference. The following is but a partial list of departments that refuse to support a national forum for women with HIV/AIDS: CDC (Centers for Disease Control and Prevention), HRSA, NIDA (National Institute of Drug Abuse), NIAID, Office of Women's Health, PHS, NIMH (National Institute for Mental Health), and so on. Oh, they will buy us off one by one, offering a few of us low paying jobs, a stipend for this or that. Offering us food for our souls. BUT, they won't support us in our efforts to become more educated about the disease we are living with. They won't help us. They won't support research projects for us to figure out what dosages to take!

Substandard Care

One of the main reasons that the government gave for not supporting this particular conference was that the Federal Government entities do not want women to meet on a national level. They want us to have regional meetings only. Regional meetings are good, however, women with HIV/AIDS need and want a national forum to gather and exchange information about treatments and care for our disease. As infected women, we have the right to meet on a national level. We have the right to talk to women from other regions and communities. The governments' strategy of divide & conquer is an old trick. Separating masses of people who have common bonds is a tactic used all the time. This national forum was designed to empower women with HIV to become national leaders in the fight against AIDS. It's clear that the feds do not want us to become empowered leaders.

In Spite of It All

Yet, despite all of the political obstacles and logistical complications, the Women's Conference went forward and the event was overall a successful endeavor. Hundreds of women felt a sense of camaraderie and empowerment. I talked with a woman from Boston who was talking to a woman from Kentucky who was on monotherapy. Of the women who had to get emergency care, the majority of them were also on monotherapy. It's apparent that women with HIV in the United States are getting substandard care. No wonder the feds don't want us to come together on a national level.

The standard of care is to treat with a triple combination. That is three different medications. It's easier to take just one pill or one thing. BUT, don't get fooled and please don't kid yourself. Studies have shown that AZT alone prolongs your life by only 3 weeks.

A Single Issue Overshadowed the Conference

A woman died at the 1999 National Women and HIV Conference, Maria (Paloma) Peach. She left behind a loving husband, a daughter, a home, and a community of positive women who looked to her for leadership and inspiration. Maria worked and volunteered at Body Positive in Phoenix Arizona. She ran the women's programs. These programs are peer designed and run. This group of women chose to call their programs "women alive" and adopted the mission statement "of, by, for and about positives." She was successful in establishing peer-to- peer support, and treatment education and advocacy programs at Body positive.

Maria knew she was sick and getting sicker. Yet, she tirelessly worked on writing an AIDS awareness book for kids, being a community leader and a voice for infected women such as herself. The National Women and HIV Conference was something that she had been looking forward to for over a year. Maria was determined to get there and to attend the conference with other positive women from across the nation. She would let nothing stand in her way. In fact, her doctors suggested to her that she should not travel to Los Angeles. She came anyway. She so wanted to be with other women to network on a national level.

Women Alive (Los Angeles) would like to dedicate this newsletter to her memory. The following is a letter written by Maria's close friend and co-worker.

Querida Maria,

Just a note to tell you how much you are loved. A note to tell you how much I appreciated the time God granted me, my time spent with you. I cherish the time we spent together laughing, crying, and loving life. You taught me so many priceless lessons. I learned how to be an advocate for all women regardless of race, ethnicity, class, or religion. I learned how to conquer adversity, how to turn barriers into stepping stones, how to make efforts to befriend my enemies. I learned how to succeed, how to have faith in my dreams, how to say no to failure and years to life experience. Thank you for sharing your family, your home, and your caring spirit with me. Thank you for being you mi hermana. You are a shining example of an angel here on earth. What a role model for our community. Now you shine in the heavens as the brightest star in the sky for us all to see. You lived for us all to know that the way one finds meaning in life is to devote oneself to loving others, devote oneself to the community and ourselves, and lastly devote oneself to creating something that gives you purpose and meaning.

Antes siempre, despues siempre y para siempre.

Before always, after always and for always,

Tu hermana, your sister
Lisa Hopkins.

For a comprehensive overview of the scientific and treatment information from the conference please see a copy of WISE Words December 1999. 1.800.822.7422

Women Alive Statement

Women Alive is created by and for women living with HIV/AIDS. We understand the pain and fear, how easy it is to hide, how difficult it can be to come to terms with this disease and reach out. Women Alive is the means we have created to help us connect with each other, exchange treatment information, bring others like us out of isolation, and take charge of our lives, our care, and our destiny.

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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.